Growing Up

Dear Cora & Louise,

Christmas is a few days away, and I find myself alone in the house. I think of you all the time.

I wanted to make sure you know how proud I am of you both.

Cora, you've recently shown a real willingness to take on more responsibility. It will sound silly years from now, but even little changes in your behavior are fascinating and exciting to me. You jumped into a project this morning where you cleared out your toys into piles that you wanted to keep, throw away, or donate to Goodwill. You were eager to get the job done, and exhibited genuine empathy for people more needy than you.

In something completely unrelated, you and I were having a conversation the other day. You casually used the word "equivalent" while you spoke. For a split second I continued listening intently before getting totally absorbed in how perfectly you used the word. It made me smile.

Louise, you've been in a phase of your life where you've discovered what the word "no" can do. Occasionally, you steadfastly refuse to do something we've asked you to do (something terrible, like "eat a bite of your dinner"). But you seem to be growing out of that. Recently, you've been eager to join in and help with little things...when your Mum has to answer the phone, you'll come over and keep feeding me...you'll jump up and help with the pets when you haven't even been asked to...you'll pull a chair into the kitchen and just start helping your Mum with whatever she's working on...you insist on helping to administer my medicine. 

It's wonderful to watch you develop. I hope you never stop growing, and I hope you continue to enjoy learning. 

I love you both, so much,

Dad

Handle with Care

Girls,

I wish I had a happy topic to talk to you about, but circumstances and life can get in the way. As you well know, life isn't a walk in the park, so I suspect I'll have a few more serious messages for you...

There's a terrible situation unraveling in Charlottesville right now. A young female student at the University of Virginia has gone missing. 

I think she disappeared almost three weeks ago. Almost immediately, security camera footage emerged. Then more and more glimpses of the young lady showed up in various other security cameras. Then nothing.

There have been no sightings of Hannah Graham, although the police do have a man in custody charged with her abduction.

It seems a little silly for this to be on my mind when you're both so young. But it's the thing that nightmares are made of.

I should be clear: no woman is to blame or bare any responsibility in a situation like this. But there are callous people with seriously bad intent in the world, so I can't help but think of ways this situation could have possibly been avoided.

Even the facts surrounding Hannah's disappearance are still murky; the investigation is ongoing. 

What the police have released is a timeline of Hannah's movements, corroborated by security camera footage, and an abridged account of their investigation.

It seems that Hannah became separated from her friends and was walking through Charlottesville alone. Cameras caught Hannah walking with the man later arrested for her abduction.

The whole thing makes my mind kick into overdrive. What if she'd remained with her friends? What if she'd been delayed, and never crossed paths with her assailant? Had she consumed too much alcohol, and become somewhat defenseless? The "what ifs" could go on and on, but they'll do nothing to help Hannah.

Be careful as you grow up. Never take your personal safety for granted. I know, sadly, that Hannah's story will be repeated in the future, and there's nothing I can do to prevent that. Maybe it's my ALS prognosis and the fact I wont be there to protect you that makes Hannah's disappearance resonate so acutely...I don't know.

I love you both more than any other thing on the planet. I care about you more than anything else  on the planet.

Dad

Organized Chaos

Your Mum bought you the game "Hungry Hungry Hippos."

A predictable cacophony of noise ensued as you both pounded away on the lever on the hippos back. I thought things might descend in to chaos, but you were both so happy to play together.

Cora, after playing, you did your homework at the kitchen counter. It didn't take long to do your homework, so we looked through some schoolwork your teacher sent home. It's fair to say you've had a great start to the school year, since your work was outstanding.

Louise, during a few games, you decided it was more appropriate to feed your hippo by hand. It was adorable and funny, since you would grab the high-scoring yellow ball every time. Your class at daycare is taking a field trip to Boxerwood Gardens tomorrow. You spent some time there during the summer at a half-day camp, but tomorrow will be your first visit with your class...and your first trip on a school bus.

I don't know why such a normal afternoon should make me so happy.  Thank you.

I love you,

Dad

DNR

Dear Cora & Louise,

There has been a huge lapse in time, since I last wrote to you. Sorry. 

I recently wrote a piece in my blog about the reality of life with ALS. I tried to be forthright about my experience. The piece evoked a fairly large response from people online and in person...mainly sympathetic responses. I mentioned you both on one occasion. I said that you were the reason I got up everyday. 

That's not an exaggeration.

At some point, you may struggle to reconcile that statement with the fact I've signed an order saying I no longer want doctors to resuscitate me in the event of an emergency...that I want to be left to die.

I think you may have a hard time with that, because I know I have. In fact, it's fair to say that it's unequivocally the most difficult decision I have ever made. 

I tried to make the decision, at first, based solely on what was best for me. But I found it impossible to keep you out of my mind...milestones in your life that I'm going to miss; grappling with the idea that I won't be there in moments when I'll feel an innate, primordial need to protect you (which is all the time); the task your mum faces in raising you by herself...dealing with the good, the bad, and everything in between...

Then I realized that - such is the nature of ALS - there's nothing I can do about any of that. I'm not sure I'll ever be able to process that. I suppose that's what really makes this so unfair; being helpless.

I've thought back throughout my time with ALS about the attitude I've tried to take while confronting my illness.  I've tried fighting ALS, even though its a losing battle. I've tried to refrain from getting angry, and I've been fairly successful. My thought is that if I only have x-days to live then being angry is a waste of time. I've tried to remain upbeat, but not always succeeded.

After almost three years, ALS has certainly taken its toll on me. 

I've decided that I want to finish my fight without invasive medical intervention. At this point, that basically means that when my muscles are no longer able to make my lungs muster a decent breath, I don't want a hole cut in my windpipe and a ventilator connected: I don't want a machine keeping me alive.

No matter the amount of love I have for both of you, I cannot imagine a life connected to a ventilator as a life where I can begin each day fundamentally happy. 

To be perfectly honest, when my time comes, I think I'll be ready for a rest.

As I write this, my mind frequently drifts off, imagining how you will feel about this decision when you're older.

Do me a favor: don't ever think this decision reflects negatively on how much I love you. You bring light, joy and love to every day. Every day. Try as I might to fight this disease, I wouldn't have the strength to fight it without the two of you.

I love you,

Daddy

Padding Around in the Middle of the Night

Amanda has taken sole ownership of the role of soothing one of the girls when they wake up in the middle of the night.

Had this happened three or four years ago, I would have kept my eyes firmly shut and been quite happy that I go to stay in bed.

These days I miss everything about it. I miss the walk to their rooms, I miss soothing them back to sleep, and I miss giving them a kiss on the cheek once all is well.

Dear Louise

At the outset, I have no clear goal in writing this. But I feel it's long overdue.

You're currently asleep, taking an afternoon nap, in your room. You were consumed with wiping the rear ends of your dolls this morning. You would then clear a space for each one on the couch, and put them down for a nap.

The care you administer is a recurring theme. You've also cared for me. A lot.

As my illness has progressed, you have witnessed the various ways i need help, and have taken it upon yourself to do quite a few things to help me.

You insist on helping to feed me pills, helping me stand up, putting on my socks, taking off my shoes, and you give me sips of my drink...to name a few.

Therein lies the unyielding, painful truth, and the beauty of my situation. I worry. I get frustrated on a level that can quickly turn to anger. I get sad on a level that can quickly turn to frustration. Then you'll saunter over and jump on my belly, and life is good.

All of which leaves me with two points to make: 1. I should amend my previous advice of, "Be happy," with, "or at least recognize that anger is  a destructive emotion, and to bear its presence for as little time as possible." 2. As I knew the moment you and Cora were born, you two are the most important part of my life. Cherish each other.

I love you,
Daddy

Newest Artwork

Dance

Dance whenever the opportunity arises

Be

Be kind

Be happy

Be full of love

Standard Bliss

There is a strange difference between what you imagine acceptable behavior from your children before they're born, and when they're alive, well, and running around naked.

Maybe ALS casts a filter. Maybe it doesn't. Maybe sitting in the shade drinking a cold or beer lowers my standards.

I'm fairly certain that it was the sound of you two laughing, splashing around, throwing rocks, collecting rocks, Louise pronouncing Cora's name as, "Ora," and Ora working on a collection of rocks...

... That had my emotions gently rocking from bliss to thinking, "fuck ALS," and back again.

Thankfully I spent most of my time in a state of bliss.

Thank you

A Day in Parenting: Language Skills

Cora, today you referred to male genitals as a, "Tenis."

Louise, you started stringing words together today...to ask for more cookies.

Both events made me smile and laugh in equal measure

Sound

Hearing you say my name is the most wonderful sound

HCTS

Know...

...that nothing has brought more joy and happiness to my life than you

What a Label

Long before my diagnosis, I created an email account for Cora. The simple reason for doing so was to give me a place where I could leave notes for her.

It took me a while after my diagnosis to make an account for Louise.

My goal is to write a short message for them both, whenever something worthy should enter my mind.

They will also appear on here under the label "TMDG"

Labels appear as links at the bottom of a post. Clicking on a label displays all the posts tagged with that label.

TMDG - To My Darling Girls

Never Forget

I love you